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May 12-18

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Well it's been a while since I sent out an update so I'm going to try to hit all the highlights while not making this too long. Linnea started her daily at home chemo back in March. It was definitely a challenge in the beginning but we finally figured out that steroids aren't too horrible when she takes them crushed up in orange juice and her methotrexate and mercaptopurine (aka 6mp) is pretty easy to get down with chocolate ice cream.

Linnea started kindergarten in August of 2023 and is loving it. She made it into the Spanish dual language immersion program so she is living her dream of learning Spanish and going to school!

Her liver has been having some trouble metabolizing the 6mp so she recently started taking an additional medicine called allopurinol to help reduce liver damage.

In September she was invited to one of Lorelei's high school football games to be the honorary team captain on their annual Pink Out game and got to do the coin toss and enjoy lots of yummy treats at a dessert party! The highlights of the night were meeting the cheerleaders and hearing the crowd chant LINNEA! as she walked off the field after the coin toss.

We celebrated her 6th birthday with a small group of friends from school and a very special surprise mermaid guest in our swimming pool! So cool! 

About 2 weeks ago we learned that Linnea's ANC was very low so we stopped sending her to school to protect her from germs. She has had a cough for a while and on the day before her birthday she woke up with a fever of 103.7° so we had to bring her into the emergency department at CHOA. Her ANC was actually lower than it was the week before so she was admitted but they determined that she didn't have any bacterial infections, only rhinovirus. The hospital did an amazing job celebrating her birthday with a mini party, a special breakfast of pancakes shaped like a 6, and strawberries (her favorite hospital food). She received numerous gifts and surprises that day but the best one was getting to go home to spend the evening with her family. 

I joined a Suwanee Moms' club last year and sent out a cry for help when we were at the hospital and they really stepped up and helped make her birthday truly amazing!

She has been on a chemo hold since we discovered her low counts but I will bring her to have her levels checked on Wednesday and hopefully she'll be able to resume chemo and return to school sometime next week.

 

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